Anyone Suffer From Neurological Symptoms?

[Maddi]

While on gluten the symptoms that bothered me the most were neurological (my GI symptoms aren't super bad... just frequency but not the big D... and well the weight loss is very disturbing)... now I was glutened a few daus ago and I'm finally feeling better today (not 100% but at least I'm functioning... I'm painting the pantry!! Superrrrr happy bc before going gluten free I barely had energy to shower!! Even though I'm new to this diet and well my energy levels are still fluctuating throughout the day...at least I have some energy). Anyways does anyone here have more neurological symptoms than GI ones? I guess since I'm undiagnosed I'm trying to see if there's any way I could get diagnosed I have read about people being negative for a whileeeee before they test positive. Now I'm wondering about gluten ataxia. I've read about it and I know it causes reallyyyyyy bad symptoms mine are not so severe. Could ataxia cause milder symptoms like... tingling/burning/numbness in the extremedies, headaches, very bad dizziness even while laying down, and ankle pain? I have really bad ankle pain when I get glutened. I'm also feel very confused and words jump around when I'm reading and I honestly think I'm reading something but it doesn't make sense so I have to read it again for it to make sense (sometimes even read it 3 times!) And I am very clumsy. I hit walls...doors... tables..it's as if I can't calculate how close I actually am to these things. Also...how do you test for ataxia? Is the only option an MRI?

[Maddi]

Sorry one of my newest symptoms that happened during this glutening was urinary incontenance.): If I sneeze I'll pee a little. It's happened 3 times for the first time in my life. ): I'm too young and have never even gotten pregnant to have these types of symptoms!

[cristiana]

Hi Maddi

 

I had neurological symptoms before my gastro symptoms really came to the fore.  I had suffered migraines for years which latterly became visual auras.  I don't have them now since being gluten-free (Spring 2013).  I am still bothered by buzzing and tingles in the extremities and when that happens I take a B12 supplement which seems to help (my B12 was low at DX, as were my iron levels).

 

Today if I get glutened I have noticed that it is my nerves that tell me, not my tummy.  My current thing is that gluten affects my trigeminal nerve and my cheek went into spasms a few months ago when by mistake I ate a Scottish shortbread cookie (or biscuit as we call them in the UK - which isn't the same thing as an American biscuit!). 

 

I have had several MRIs in recent years for various reasons and they were normal, except for one showed that my C-spine is in poor shape (and that was what was causing my dizziness!).   Problem with celiac disease is that it is difficult sometimes to know if one should attribute a particular symptom to the disease or something else, which can include the aging process.

 

What tests have you had so far? 

[Maddi]

Honestly, I've been tested for Celiac three times. First time was 2years ago when I had low vitamin b12 and low vitamin D and folic acid for no reason. (I had just had the stomach flu). I tested negative. Then in Feb of this year... I tested negative again the tests that were done that time were:

IGA serum: 250 range:91-414

Deamidaded gliadin IGA: 4 range: 0-19

Deamidaded gliadin IGG: 2 range: 0-19

Ttg IGA: 2 range: 0-3

Ttg IGG: 2 range: 0-5

During that time my only symptoms were frequent stools and tiredness.

Then my symptoms went full swing in April. Starting with severe anxiety. Now 2weeks ago I went in and was tested again. Those tests I'm not sure which ones they were. I know he tested total IGA again but not sure what else. I'm going in on Thursday to talk to him again and request a copy of my results. So.... I was gluten light for

About a month before my test and gluten free for about 2weeks prior to my test (with mistakes of course)... I'm not sure if that really matters but I have all the classic Celiac symptoms including weight loss. Now being off gluten I finally have energy after not having energy for about 2years and having severe fatigue for 7 months. ALL Of The sudden a few months ago I developed Gerd and spasms of my esophagus that have gotten better while being gluten free but come back really badly (it even makes it feel like my heart is skipping a beat) if I eat gluten.. it even causes me to have difficulty breathing. I just want a diagnosis so that I can be taken seriously. I'm beyond thin now (93lbs) yet doctors aren't really listening and they think I'm not eating when I'm eating more than I ever have! Either way I'm cutting out gluten and I'm hoping my symptoms disappear and my digestion gets better.

I know it's possible to test negative for celiac with blood tests but have a positive endoscopy. I had an endoscopy last year bc of my frequent stools which weren't even that bad... they took 3 biopsies of my duodenum and I was negative for Celiac. Now my doctor says if I tested negative last year then there's no way I could have Celiac. A. My symptoms had just started and B. They didn't even take enough samples!!!!! /: I even read about someone diagnosed via PILL CAM bc her damage was further down her small intestine!!!! I'm certain gluten is my problem. It makes me too sick when I ingest it! !#!

Sorry for the rant. I'm just frustrated with doctors who think that their tests are 100% accurate. And then say it's all in my head. I WOULD LOVE for them to feel how I've felt in the past few months and then have them get back to me. My anxiety is gone. I went from panic attacks to 0 anxiety in a few days after going gluten free. Obviously there's a correlation. My body reacts crazily went I eat gluten. That has to be the cause of my sudden weight loss.

[cristiana]

Maddi, I am so sorry for all you are going through.  I have to say I am no expert on the readings and what to do if one doesn't show as positive - maybe someone else can chime in - but it does sound like you are going to have to keep going back to the medical profession if you want answers.  Although my own readings were in fact through the roof when I was finally tested my celiac journey was not a direct route to diagnosis, six months prior to DX I was anemic and had elevated blood protein which got the doctors thinking it might be something quite different and serious.   The neuro symptoms I don't suppose anyone could have connected with celiac disease but their response to the gluten-free diet showed it probably caused them.  For the moment I can only send you a big hug of support and hope that someone else reading this might be able to throw some light.

 

xx

[Maddi]

Thanks a lot. Unfortunately I seem to be one of those who test negative with blood work. Sigh I'm going back to my doctor on Thursday and I'm going to request the gene test. At least that way I can eliminate the possibility of having Celiac or confirm that it's a possibility. I'm also going to print out some stuff showing people's Celiac stories and those who have had a negative blood serum. Either way I'm off gluten and I'm NOT going back. Too many symptoms. I'm already treating myself as if I have Celiac and even convinced my parents to not have any gluten in the house. I just wish I could get a diagnosis. Someone suggested I do the gene test and get off gluten and if my symptoms subside that maybe my doctor can give me a diagnosis.

I'm also going to have my parents tested... they have symptoms that are iffy. All the women on my dad's side of the family have hypothyroid (starting with my grandmother and one of her sisters recently got diagnosed with thyroid cancer and the othere's all have thyroid disease!) My aunt (my dad's twin recently got diagnosed with Fibromyalgia... and has a problem with gluten but she told me she's never gotten tested for Celiac... but she's off gluten anyways).

I've had so many problems. Problems someone this young and this thin should never have! My normal weight is 105-110 and I'm 5'3. Problems with my gallbladder. Problems with my bladder. I have a fatty liver. Now GERD. I supposedly have IBS.. yet I never believed that diagnosis. My body feels as if it's being poisoned. I finally feel better. I'm going to request the gene test then if that's positive I'll request a repeat endoscopy (maybe... depends how long this takes since this week will be my 4th week off gluten). All I know is that no way I'll ever go back to gluten. Maybe if my gene testing i positive and I react positively to the diet then my doctor will diagnose me. Or if my parents or someone else in my family test positive for Celiac too.

Just some questions did you have any weight loss? How long had you been sick for... And how long did it take you to feel normal again?

[cristiana]

It is good you have a plan.

 

I lost about six to eight pounds when my D started, in a very short time, then stabilised for a few months but the weight then crept up again slowly once gluten-free and now I am on a diet trying to lose what I have gained since healing!

 

To be honest I didn't feel too ill at DX with stomach pains etc, my thing was wondering why  had all that tingling, buzzing, and odd blood readings.  And anxiety which I have posted about separately.   I recall saying to my husband in July 2013 that I finally felt normal again and almost the next day got terrible vertigo (felt like I was walking on a moving deck at sea!) and then I got tinnitus and so eventually just before Christmas 2013 I got some MRIs done and that revealed the problem was my vertical spine and not ataxia and as for the tinnitus, there was no explanation.  That waxes and wanes. 

 

They also found I had nodules in my thyroid but those turned out to be harmless.   Then I got shingles without the rash and sacroiliac pain beginning of 2014 and felt terribly worried that all this pain was something far worse.  But thankfully it went.  Then this year came the next exciting instalment - the development of a tingly cheek and odd sensations in my cheek when glutened. You see, there always appears to be something (as my pal Icelandgirl and I often say) - but the big conundrum is how much of it is anything to do with being a celiac, how much is in the mind (I tend to make much more of these things than I should, I am sure) and how much is due to the aches and pains of middle age - not your problem, yet!

 

Everyone's journey is different - some of my pals have just made almost instant recoveries whereas I have taken longer.  

[Maddi]

At least that gives me hope in gaining weight. I've never been overweight. Always have been skinny. But this is beyond my normal weight... I'm too thin. I hate it. /:

Wow you've been struggling. So sorry.... I know how that feels. Hopefully you get everything sorted out! I'm sure you have but have you gotten your antibodies checked again? Maybe you're getting glutened somehow. Or maybe a multivitamin would be good?

Yeah I know everyone is different. I know it depends on how long you've been sick for too. I've been sick for 2 years 1/2. I hope my recovery doesn't take too long. I need to buy a multivitamin sooo badly. I juiced this morning, hoping it'll help me with my nutrients!

[LauraH]

My neurological symptoms really came on in the last couple of years before I got diagnosed, and they were what tipped me over the edge to see all the drs it took to GET a diagnosis.  I'd had D and intestinal issues for my entire life, but it wasn't until I had an incapacitating number of headaches that were migraine-like but didn't respond to any medication, migraine meds, narcotics, or anything.   I had episodes of losing my words and having my thoughts slow down dramatically, and then some episodes of confusion and getting lost in places that I am familiar with.  A couple of times I forgot how to drive WHILE I was driving, and wasn't even able to pull over.  Thankfully those episodes passed within a  minute or two, but after 2 of them I quit driving, and that incapacity, along with the terror of being lost in my own house (I am 47!) and a few times where I had to leave work because I couldn't put together a thought,   were what sent me to the neurologist/rheumatologist insisting on answers.  After that I went to the GI doc - I was trying to treat the neurological symptoms and arthritis/fibromyalgia before dealing with the D because they were so much more serious, but when I learned that the headaches were probably dehydration I realized I better take care of the D too, and that's when I discovered that it was all the same thing.     

 

ALL of those symptoms have gone nearly entirely away since I changed my diet.  I have microscopic colitis too, because of the years of damage to my innards, so my diet is much more restricted than just gluten-free, but the D is manageable, the dehydration is gone, and my innards are getting more resilient to more foods as they heal.   In addition, my arthritis/fibromyalgia pain is MUCH better.  There are non-gluten foods that trigger a lot of pain, but as long as I stick to safe foods, I'm pretty much fine.  

 

 

[LauraH]

Oh, MADDI, it's been a year since my diagnosis, and it took about 6 months after doing the total elimination diet (I started at chicken broth) to have enough foods to feel pretty normal and have enough variety that I didn't feel like I might die of a weird deficiency.  It took about that amount of time to feel ok physically,  and now, after a year, I feel good almost all the days.  Weather changes, stress, and the unexpected dose of garlic in my garden spray can make my joints stiff and hurt, but if I get D it only lasts a couple of days now and I bounce back pretty fast.  

[cristiana]

That is such a good idea re: antibodies.  My consultant just monitors my liver function tests and iron - I should request that test, too.  TBH, there is always room for improvement when it comes to my lifestyle - I don't eat out anymore but I think possibly our shared oven at home and shared pans are a problem.

 

Thanks for your kind words.

 

Wow you've been struggling. So sorry.... I know how that feels. Hopefully you get everything sorted out! I'm sure you have but have you gotten your antibodies checked again? Maybe you're getting glutened somehow. Or maybe a multivitamin would be good?

 

[Maddi]

Laura: Hearing about others suffered as I am makes me feel so much better (not bc you suffered but bc it gives me HOPE!) gluten has wrecked havoc on my body and has caused me to take so many antibiotics that I wish I knew the cause so that maybe my problem wouldn't be so bad now. Not that it's been super long (I know a lot of Celiacs suffer for over 8years since that's about how long it takes to get a diagnosis!!!) I am glad that now you're able to at least have better control of your health! I hope to one day have the same.

Funny you mention the "scared of dying of some deficiency" bc that's where I am now. Lol I haven't gone around to buying a new multi (just discovered the one I was taking a month ago has wheat grass and barley) and I was reacting to it with nerve pain!! I'm now trying juicing too which I'm sure will help me some! !!

[Maddi]

Cristiana: It's clear I've been reading too much on these forums. lol But yes have your antibodies checked. Since I'm not diagnosed I wasn't taking cross contamination very seriously. Badddd idea. I got glutened last weekend bc of it. I was feeling way better and then I start getting sick. Now I'm feeling crappy with insomnia and I realize it's these stupid stress and adrenal support pills that are giving me hot flashes and insomnia (not bc they have gluten but bc they have adrenal cortex and it's screwing with my hormones! And I thought they were going to help bc they have b complex with zinc and vitamin C too. Sigh I'm learning that you have to be careful with supplements. While I was up at 3am this morning I kept wondering what could be causing my insomnia... then I was able to trace it back to these pills!! Hopefully I'm back to myself in a few days since I was feeling better since I had been glutened. All this is so harrrrrddd to navigate. You want to feel better sooner so you take pills and then they make you feel worse!!!!

[Maddi]

Oh and one more thing, you reallyyyyy shouldn't be sharing pans with your family! Try to at least buy one pan for yourself and clean out a top cabinet shelf for yourself too. That's what I did. Maybe it's a simple fix like that. I've read small cross contamination occurrences add up with time and will make you sick again. Celiacs have to be very careful.

[knitty kitty]

Open Original Shared Link

This article may be of help.

[LookingforAnswers15]

Hi Maddi,

I had a bunch of weird neurological symptoms that made me worry about MS. I had random muscle twitches all over the body but I was freaking out especially when I felt them on my face and lip. I think I even somehow messed up one of my facial nerves ( can recover without any treatment but it can take up to 2-3 months) where I felt that the muscle underneath my eye was first twitching, followed by a very intense pain and stiffness. Looking at it, you could not notice anything but it was hurting. I had headaches and dizziness as well. I fainted once. My arms seemed so heavy to even put my hair in a pony tail. These symptoms are better now and MS has been ruled out so it has to be celiac or other AI related in my case. My memory is horrible and concentration even worse. Apart from this, I easily get anxious and constantly worry about anything family related. If my family member does not pick up the phone, I think of the worst case scenarios. While I always cared and worried about my family,I never used to freak out just because someone could not answer the phone at that exact moment. Hopefully, it will get better. I hope all your issues resolve. You found this forum on time and getting educated. I wish I did ...maybe I would have been much better by now. I strictly followed the gluten-free diet and paid attention to cross contamination but I did not know how dairy and other allergies could have also slowed down my recovery Good luck! 

[cristiana]

Hi Looking for Answers - sorry to interrupt - but I just had to tell you I think your muscle thing under your eye is very much like my problem.   Mine probably would have got better by now but I ate a gluten cookie by mistake that really set it off one day.  I do get pain, twitching, a light tingling on the apple of my cheek - on the whole it isn't getting worse, in fact I have had some almost symptom free days recently.  I also feel there is pressure in my sinus which probably isn't helping - or maybe it is part of it.  I am going to try to pay more attention to not being CC'd.  (Thanks Maddi for your tips).  I find this neuropathy business difficult because I have only ever met one celiac with neuropathy issues since DX and yet all the research would indicate it is in fact quite common. And there are a lot of posts from sufferers on this site.

 

Thank goodness for this site otherwise I would feel very alone.

[Maddi]

LookingForAnswers15: I'm suffering from a lot of muscle twitches too. And hot flashes and muscle cramps./: Honestly, this is all very new to me and I'm a bit overwhelmed but thankfully this site had helped me so much. I keep questioning whether I could or not have Celiac but I have the typical signs. I can't understand why my blood work is negative. ); yet I seem to have damage. I mean I go to the bathroom quite a bit and I'm so thin!!!!!

Cristiana: No need to apologize! I completely share the same feeling of loneliness. Especially since I'm undiagnosed. And you're right, neurological symptoms are very common with Celiac but remember not everyone has the same Celiac symptoms.

[Seeking2012]

While on gluten the symptoms that bothered me the most were neurological (my GI symptoms aren't super bad... just frequency but not the big D... and well the weight loss is very disturbing)... now I was glutened a few daus ago and I'm finally feeling better today (not 100% but at least I'm functioning... I'm painting the pantry!! Superrrrr happy bc before going gluten free I barely had energy to shower!! Even though I'm new to this diet and well my energy levels are still fluctuating throughout the day...at least I have some energy). Anyways does anyone here have more neurological symptoms than GI ones? I guess since I'm undiagnosed I'm trying to see if there's any way I could get diagnosed I have read about people being negative for a whileeeee before they test positive. Now I'm wondering about gluten ataxia. I've read about it and I know it causes reallyyyyyy bad symptoms mine are not so severe. Could ataxia cause milder symptoms like... tingling/burning/numbness in the extremedies, headaches, very bad dizziness even while laying down, and ankle pain? I have really bad ankle pain when I get glutened. I'm also feel very confused and words jump around when I'm reading and I honestly think I'm reading something but it doesn't make sense so I have to read it again for it to make sense (sometimes even read it 3 times!) And I am very clumsy. I hit walls...doors... tables..it's as if I can't calculate how close I actually am to these things. Also...how do you test for ataxia? Is the only option an MRI?

 

I'm one of those 90% neurological and 10% GI people.

 

Like you, I have tingling, numbness, etc in the extremities, headaches, dizziness, clumsiness, random pains in my body including ankles, but these symptoms are present even now that I've been gluten-free for over a year. Of course, they were worse when I was eating gluten (especially dizziness, clumsiness, headaches). One of the most obvious signs of an accidental glutening for me is a headache. First the headache comes, and then the characteristic sleepiness, brain fog, weakness, lack of energy, inability to think or concentrate or function at all, and the need to nap. In fact, I have had accidents because of my clumsiness and dizziness, including a disfiguring hematoma. Cannot read at all when glutened; not capable. Your symptoms sound very similar to Celiac, but based on your blood test and negative endoscopies, I would have to conclude that you do not have Celiac (it is something else).

 

Here is my belief based on everything I've read and heard up to this point about Celiac and autoimmune disease: Celiac is just one test that has been discovered to detect one form of an autoimmune disease related to the exposure to gluten; there may be other gluten-related forms of autoimmune diseases that are not yet discovered. You may be having problems that there is currently no blood test for. Trust your body; if you become ill every time you expose yourself to gluten, then that means that your body is having either an allergic or autoimmune reaction to the gluten. There are blood tests you can take that will show general autoimmunity; I would look into that.

 

I also believe, based on your low B12, D, and folic acid, and family history of hypo, that you may have other autoimmune issues going on, very likely thyroid if not others. You should immediately get a full thyroid panel:

 

TSH

Free T4 & Total T4

Free T3 & Total T3

Reverse T3

Thyroid Peroxidase TPO

Thyroglobulin Antibody

Vitamin B12

Vitamin D

Folic Acid

Iron

 

Funny how all these things seem to be connected. So many patterns. Seems like Celiac and hypo go together almost. I have high Thyroglobulin Antibody but T3 and T4 and TSH all normal...and GERD runs in my family too...

 

Also, you mentioned you took antibiotics. This is very important; antibiotics can destroy your immune system and cause autoimmune diseases in more susceptible people (we are in fact those people) if you do not restore your microbiome. You need to start a course of probiotics immediately and continue them indefinitely. The more I learn about how important the microbiome is, the more I realize the importance of supplementing with probiotics. 70% of our immune system lives in the gut; our friendly bacteria are part of every function of our bodies, not just the immune system, and killing them is the same as killing ourselves. I am currently using probiotics and I can testify that they help me in every way (neurologically and GI). I take one that has 34 strains and claims 100 billion CFUs.

[bartfull]

Maddi, that article KnittyKitty posted on the previous page is an eye-opener. It seems that folks with NCGS are MORE likely to have neurological problems. If you tested negative you most likely are NCGS. The "prescription" is the same though - gluten-free for life.

 

Back when my Mom was diagnosed in the mid- eighties, most doctors had never even heard of celiac. That seems to be the way it is now for gluten sensitivity but I think one day soon NCGS WILL be recognized and they will find a reliable test for it. In the meantime, just stay as strictly gluten-free as is humanly possible.

[Maddi]

Seeking2012: Wow that's a lot of good info and you've given me a lot to think about. Well what if when they took the biopsies they only took 3? And at the time I didn't have any weight loss? I guess I'd just like to rule out one thing at a time. I've had thyroid tests twice this year. So I don't have a thyroid problem. My dad just told me that he feels better off of gluten (I kinda made the whole household go gluten free). I know my body is fighting something else bc for the first time I have a Epstein Barr flare up. My body is all retarded. From my yellow, bulky stools with undigested food to my tummy aches and my neuro problems. And when I eat gluten the next day I have massive fatigue. Unfortunately my doctor told me he can't test me for the genes Bc they're not covered by insurance and they are verrryyy expensive. So for now all he can do is test me for pancreatic insufficiency and help me find a gastro that specializes in Celiac or in malabsorption. I know I have malabsorption. My doctor today has told me something that stuck with me. He said: do you have celiac? We don't have an definite no. Why? Bc tests aren't 100% accurate and you have many symptoms. A positive is a positive but a negative doesn't unequivocally say that you don't have Celiac. He suggested I try to get in contact with Dr Fasano. And I'm going to try to. See if maybe he can give his expert advice. All of my organs have been suffering little by little but now it's gotten worse. It started with my tiredness, moved on to gallbladder attacks, to bladder problems (IC), intestinal problems and now to neuro problems. This is now systematic.

I am now on probiotics. (: Hopefully they help! Again thanks for all your suggestions. And I'll keep you guys updated with anything else they discover.

[Maddi]

Bartful: Yes! You could be absolutely right! There's still a lot they have to learn about NCGS! But I think now they're finally taking it seriously and maybe just maybe they'll try to come up with a diagnostic test for it.

[Maddi]

Oh and sorry just to clear something up, I have so many symptoms that the ones that bother me the most are neurological. I can deal with the frequent bowel movements and the nausea along with the GERD but my worst most debilitating symptoms are neuro related. (And they just started) my tummy issues were the first ones to show up. Just wanted to clear my quetsion up since I know you guys mean well... I just didn't want you to think those we the only symptoms I had (since maybe I worded it wrong, sorry brain fog). I literally read a Celiac symptoms list and I have most of the symptoms. The only thing missing is the rash! But I have acne and keratosis pilaris. I have soooo many probs./:

[LookingforAnswers15]

Hi Maddi,

 

I am confident that you will figure it out! I really hope that you will start gaining weight soon. It may sound silly but if you like bananas, make sure to eat them daily, at least one a day. I read some article about a doctor who in the early 1920s prescribed it to some kids for stomach problems, which turned out to be most likely celiac (based on later generations having issues and being tested). Anyhow, I did not know if I should believe that but I know people with stomach issues who were very skinny but started eating bananas and gained. A month ago, I was feeling awful, could not eat so I lost a noticeable amount of weight. As soon as I could eat anything, I ate bananas and gained the weight back. Good luck!

[cristiana]

Hi Maddi,

 

I am confident that you will figure it out! I really hope that you will start gaining weight soon. It may sound silly but if you like bananas, make sure to eat them daily, at least one a day. I read some article about a doctor who in the early 1920s prescribed it to some kids for stomach problems, which turned out to be most likely celiac (based on later generations having issues and being tested). Anyhow, I did not know if I should believe that but I know people with stomach issues who were very skinny but started eating bananas and gained. A month ago, I was feeling awful, could not eat so I lost a noticeable amount of weight. As soon as I could eat anything, I ate bananas and gained the weight back. Good luck!

 

 

So true about the bananas - a dear friend who qualified as a nurse here in the UK in the 1940s said that in Britain during WWII any bananas that made it through the maritime blockades were given to tiny children with stomach problems!  As for the rest of the population, they had to do without, so much so that some children didn't even know what they looked like 'til after the war!